Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Tuesday, June 9, 2009
Big Day Today to Make Change
Today is a big day.
I’ve been looking forward to today with anticipation for a while.
First things first, before reading about us, remember folks, there is an advocacy training meeting TONIGHT at The Congregational Church on Pleasant St. in Claremont. This starts at 6pm.
Some of my favorite healthcare advocacy groups, NH Citizens Alliance and Working Families Win, will be educating attendees on how we can incite political change in health care.I am so excited. This has been a dream of mine, FOREVER, to incite social change through peaceful, active process.
I didn’t exactly think political process, but this has been the best, most effective route.
Many accomplished activists will be there to share their words of wisdom on how to make change happen in our state.
Change is good.
In healthcare, change is necessary. We have reached the “Era of Inevitability” where the United States has no choice but to change it’s current health system or face bankruptcy along with the financial markets, possibly thrusting the quality of our health care delivery systems into the dark ages or at least that of the third world.
Don’t think it could happen? It all ready has.
I studied this particular happening in Morningside Height in New York New York.
Money has a lot to do with quality of care. I’ve seen and studied the cultural epicenter of this problem.
Trust me, we don’t want it in our state.
We also don’t want 2 hour wait times to get our prescriptions filled when he have just left the doctor diagnosed with a bacterial infection. We are contagious, sick, and standing in line.
This is comparable to the emergency department I worked in where it was common for a person to come in complaining of “fatigue, night sweats, flu-like symptoms” only to lay and wait, sprawled out on the ER’s waiting room floor, coughing and hacking for twelve hours before being diagnosed with tuberculosis.
Take it from a triage nurse, “Fatigue, coughing, night sweats, and flu0like symptoms” are on a lower tier than “gun shot,” “heart attack,” “respiratory failure,” or “Drug overdose.”There is always that other term “Coding” which means someone is actively dying and needs care first.
When I would hear “cough and fatigue,” I would often hear “should go to the clinic and not the emergency department.”
Symptoms that represent TB an insidious, but they are not emergent. Emergency Departments are for life threatening occurrences.
A diagnosis of TB starts with vague clinical signs, but the persons presence in the ER waiting rooms spreads the bacteria vastly, especially when two hundred people are filing through in a twelve hour period.
Nobody wants that here, but it could happen. I vote the first place it will start is in our emergency department waiting areas or in the lines to the pharmacy at Rite Aide or Walmart.
This is how an outbreak starts.
I’m not saying this to scare you, but if you are, go wash those hands of yours and make sure to keep a couple feet away from that person hacking.
I certainly do, and it’s not only because I’m immunocompromised post transplant.
I don’t have the ignorance that is blissful.
Today is also the day of Xander’s big surgery.
We have been preparing and doing some pre-celebration.
Yesterday, after school was his time.
He chose to visit memere at the farm. He went to see the chickens and the little chicks, who are medium chicks now.
He hung out in the coup and would try to catch the little ones one-by-one, which I wasn’t too fond of until I realized he was picking up the chicks and lifting them to look out the only slot of fenced window that existed.
Chicks are raised in a controlled environment and don’t see much f the outside until they are older.
Xander would corner a chick and gently pick it up, meanwhile the bird is squaking, flapping, or staying very still depending on their personality type, until Xander would put their little head up to the window where they could see the outside world.
Then the chick would stop, stare, and forgot that this monstrous child had just scared them to high heaven.
The bird would clearly relax and feel at home looking outside.
It was fascinating to watch.
I never would have thought to pick up chicks so they could see the outside world.
Actually, I wasn’t picking up any chicks, chickens are dirty animals. I wasn’t even going into the coup. I stood at the door, blocking the entry way, and made sure to breathe towards the outside, not wanting to attract some terrible acterial or fungal infection.
X certainly does have a way with animals nonpareil.
Then it was off to celebrate Nana’s birthday at our house with gig, grandpa, nana, pepere, and uncle Pat.
We had promised X whatever he wanted to eat since it is a “last meal” of sorts.
I made him corn on the cob, his ultimate favorite. He bought pizza and chicken nuggets, more favorites.
Gigi (aka great grandma) brought Xander’s favorite chocolate chip cookies and I had baked a yellow cake with chocolate frosting.
We let him eat and eat and eat as much as he wanted.
He said he had a great day yesterday.
Good thing, I’m not sure he knows what he is in for today, but we have prepared.
He’s requested meatloaf and potatoes as “sick food.” I also have jell-o with whip cream, pudding, and apple sauce. Of course, we have ice cream.
This is what kids think of when they hear they’ll have their tonsils out “I am going to eat ice cream for every meal.”
Sure kid, I’m going to let him think that.
I also bought cheese slices and deli turkey.
We have gingerale since he thinks that is a magic elixir that cures everything.
I don’t know where he may have gotten that idea from (he he he).
I also bought him the Wii video game “Up” as a surprise for being brave.
His request, but I don’t think he really thinks I bought it for him.
I hope it keeps him seated and laying around in his cot on the floor in the livingroom, getting better. We’ll see.
Speaking of “up”, everybody run to the theatres to see it.
We did and I loved every second. It’s a funny movie with a message: Don’t miss out on life. It flies by. Enjoy the precious moments and follow your dreams!
Of course, it says all these thing while making you laugh the entire time. It is really for all ages so don’t be shy. At least hit it up when it comes out on rental.
We have set the sick stage in our livingroom so X can be cozy and feel taken care of.
I hope this sick prince thing doesn’t get to his head.
He shouldn’t be anticipating me waiting on him hand and foot, but he is reveling in the idea that he is the sick one and HE needs to be taken care of, not US for once.
I got it, buddy.
Unfortunately, I haven’t been feeling top notch.
Again, on Sunday, I did a diet cheat day. Where did I go?
I really can not eat McDonalds. I really should never, ever allow a cheat day in my diet again.
I then went home and ate left over Chinese food.
These steroids make me crave fat and sugar.
They do not make me crave fruits and vegetables.
I need to resist what the medication is telling my body it wants, since my body does not really want it.
Actually, my body hates it.
Sunday night I experienced the same diffuse abdominal pain with sweats and nauseas that landed me in the hospital a couple weeks ago.
The agony was so sever I took 15mg of morphine with no relief. I then took one mg of ativan for the nausea, and since it was 6pm, I was hoping it would make me relax and sleep.
When this combination didn’t work, and it is quite the knock-out combination, I decidd I didn’t want to be awake, that the day need to stop because I couldn’t cope with the pain.
I took my nightly dose of ambient. I think I was asleep by 6:30pm.
I had hoped this pain was solely dietary.
I have been experiencing terrible acid reflux also, alongside the nausea and diffuse abdominal pain.
Acid reflux doesn’t really describe interior burning with a wish to poke holes in your chest to relieve whatever is happening inside is more like it.
Severe, debilitating acid reflux like symptoms is more accurate.
I have been taking tums. I’ll probably hop back on my omeprazole.
I stopped taken my Celexa.
As you may remember, the celexa is athe SSRI anti-depressant my insurance company bullied me into taking instead of lexapro, which did not cause this side effect.
I have taken Zoloft previously and this painful acid reflux would present itself every once and a while, leaving me curled, heaving on the bathroom floor praying for any sense of relief.
The possibility of this occurrence was the primary reason I did not want to switch medications, even though celexa and lexapro are “structurally similar” one happens to give me heart burn so severe I wish I would die and the other doesn’t.
Needless to say, I have not been taking my celexa.
I have an appointment with my PCP, Dr. Matzkin, today to discuss this among other things.
Since I’ve graduated to monthly meetings at The Farber, and Dr. Matzkin has been a wonderful resource and safety net throughout the process, I want to meet with him to give him a formal update.
Primary Care Providers are incredibly important to keep in the loop no matter what you are experiencing healthwise.
They are the backbone of the medical system.
Treat your PCPs nicely. Be sure to find and have a great one. I do.
I was actually quoted as the number one reason for primary care providers in an article online.
Oh my goodness! I just googled myself to find this article when I stumbled upon an article entitled “Top 50 Cancer Sites and Resources.”
GUESS WHO IS NUMBER 4!!!!
That’s me, my blog. YAYAYAYAY. Life is good today, despite the diffuse abdominal pain and burning in my chest. Despite the fact my son is haing major surgery and its raining.
Forget all that, I’m number four on the top 50: http://www.asbestosnews.com/articles/top-50-cancer-sites-resources/
I beat out Kris Carr of Crazy Sexy Cancer Fame and Kairol Rosenthol who is a writer from the San Diago area.
Both have book deals.
Mine is coming. I am certainly writing a book. It’s entitled “Real Woman are Bald.”
I have the general concept to seel it written and about 160 pages chronicling the life and times of Me, miss cancer warrior princess.
I intend on writing another, “Adventures in Alternatives” as the title, maybe, if I set out on my journey to Europe for healthcare.
We’ll see if that route needs to be taken July 30th 2009 when I get my PET scan.
I’ve postponed diagnostic testing for the summer, so I can LIVE IT UP.
X is up. I’m starting now with the knowledge I AM MAKING A DIFFERENCE! How can it get any better?